Seth Gregorash, six, has neurofibromatosis, but he’s also got friends and family running a half-marathon in Orlando to help raise money and awareness about this condition.

Today, Tracy Gregorash, Dorinda Steven and Charlie Menard are enjoying the sunny weather in Orlando, Florida, as they recover from the half-marathon they ran yesterday.

But the three Minnedosa residents are not simply on Mickey and Minnie’s turf to test their physical stamina or to enjoy the sights. The catalyst of the running trio, Gregorash decided to train and run to raise funds and awareness about neurofibromatosis or NF, with which her 6 year old son, Seth, is afflicted. This is a genetic disorder which causes tumours to grow on nerves and subsequently, adversely affects other tissue. Because individuals with NF each have their own set of challenges, there’s nothing cut and dry about this disorder. The stress brought upon the family by the waiting to see how things evolve set Gregorash into action.

“Seth has an MRI every three months because he has a tumour in his chest that is close to his heart, lungs, carotid artery and bracheoplexis. We’ve known for three years that it’s there and we’ve been monitoring it. But, no one wants to do surgery because it’s risky. This wait-and-see thing has been driving me up the wall,” she says. “So, I decided to run in this marathon. It’s something that gave me a purpose, a direction. It’s been awesome for me.”

Wanting to help raise funds for research for the disorder with which her foster brother lives, Steven has also been training with Gregorash since last spring and has really been looking forward to the run.

“I wanted to get involved and learn more about NF,” says the grade 12 student who has aspirations of becoming a nurse and who has not only been training on a regular basis, but working part-time and studying for a provincial English exam, which she writes Tuesday. “And I think that Tracy doing this is a really good thing. She’s awesome!”

Eager to learn more about the disorder and to connect with other parents whose children have NF, Gregorash has been online, chatting with others in similar situations. In the process, she discovered that the Orlando marathon has a fundraising component organized by The Children’s Tumor Foundation (CTF). She has been training and fundraising for research since last April.

“The success of it has been beyond (my expectations.) The whole town just went nuts. Individuals and groups have done fundraising — from potluck suppers to a haunted house to a volleyball tournament,” says Gregorash, who adds that the village of Onanole has also participated in fundraising efforts and most recently, the operators of the Fas Gas station has organized a raffle there in which people guessed the time in which she ran the half-marathon.

“I’m very excited to go meet families at Disneyworld. I’ve talked to people on the website and so, my main goal is to be in a room with people who deal with the same thing,” says Gregorash, who is frustrated by the lack of local support, this despite the fact that NF is not that rare a disorder, afflicting 1 in 4,000 children.

In order to qualify to get support from the United States-based CTF for lodging and airfare, Gregorash had to raise at least $5,000, and she has done that. In fact, she and her community have raised three times that amount. The fringe benefits of this endeavour have been many, including solidifying family ties and making steadfast friends along the way.

Foster daughter Steven was on board from the get-go. Meanwhile Menard read about Gregorash — a substitute teacher in Menard’s school — and her dream in the town newspaper. So, the teen devised a way to raise funds and has become as committed to this endeavour and the run as the other two.

“I went on the ’net and read about NF and Tracy had her set goal of how much she would like to raise. Then, I had a fundraising idea — what I could do to help her out and get the community involved. I designed a button and Seth did the writing — Run With Me — and the footprint is his too. I wanted something that people could wear and Seth could see around town,” says the 15-year-old Menard. “And Tracy is so appreciative of what’s gone on.”

The teen took out a $500 loan to have the buttons made, which in turn helped her raise $2,500. A few weeks after her selfless gesture, an anonymous donor in town paid off her loan.

“The response has been overwhelming. It leaves me speechless. It’s amazing. It’s been such an adventure,” says Menard, who has become very close with the entire Gregorash family since she undertook to help Tracy. “I think of her as my sister.”

Though there are many marathons in which she could have participated, Gregorash chose the one in Florida, originally thinking that her family could use the break. However, Westman Dreams for Kids has stepped in and with the aim of offering the family respite, it was decided that a separate trip to Disneyworld in February would be more beneficial to everyone.

“I think it’s great! The thing is sometimes you just need to get your mind off things. I think for (Gregorash, Steven and Menard) to do the run is fantastic because there’s a purpose to that,” says Terry McLenehan, a family friend and the loans officer who dealt with Menard.

“But I also think it’s good for (the Gregorash family) to get away and just forget about their problems. You never know. I guess none of us knows from one day to the next what’s going to happen, but especially when you know something’s wrong with your child, it’s kind of nice to get your mind off things and just go somewhere and be a family.”

This restored Gregorash’s focus on training and on the run itself. Earlier in the week, she was enticed out for coffee by some friends and had yet another show of support from the citizens of Minnedosa. Waiting for her at Chipperfield Coffee Company was a good luck reception.

“The town’s really rallied behind her and supported her. Minnedosa is a very unique town. When they see one of their own in trouble and especially a child, people here just rally behind things. I’m really proud of the town of Minnedosa,” says McLenehan. “I think what Tracy’s doing is fantastic. This empowers (Seth’s parents) a little bit and gives them a sense of doing something to make things right. I really look up to them for that. And I hope Tracy looks back at this — and I think she will — as an amazing run.”

After seeing Gregorash regularly run around town for the past nine months or so, her success in achieving her goal to participate in this half-marathon comes as no surprise to McLenehan.

“Every time you see her, you know she’s working at it,” he says, describing her as a determined, spiritual, and caring individual. “But, I think the number one thing is that through this, people will know what NF is.”

To contact Tracy Gregorash about neurofibromatosis or to make a donation to her fundraising drive for research, call 867-3219 or visit her webpage at www.firstgiving.com/sethg